My Story: Losing 150 Pounds While Living with Chronic Pain

Editor’s Note: With September designated as Pain Awareness Month–the National Pain Report is welcoming personal stories from the chronic pain community about how they’ve dealt with their chronic pain. This is the first contribution:

It was Summer 2001 and life was great! Awesome friends, a partner in a successful company, pursuing my Master’s degree in counselling, playing sports, and travelling. I was living a good life and things were going as planned, until I noticed changes in my body; stiffness and pain in my neck, involuntary movements, and trouble with my balance.

Tom, 2002- present

I saw many doctors over the course of a year before being diagnosed with dystonia. Dystonia is a neurological movement disorder that causes muscles to involuntarily contract, producing painful, awkward movements and postures (imagine the pain of a Charley horse that never goes away). Performing everyday tasks such as sitting, standing, walking, driving, shaving, brushing my teeth, combing my hair, eating, talking on the phone, etc., became almost impossible.

By the time I was properly diagnosed, I was in such extreme pain and disfigurement that I was pretty much unable to do anything on my own. From the forceful muscle contractions in my neck, my head was stuck in a turned position and pulled towards my right shoulder, which significantly worsened with any type of movement because of the intense spasms. I literally lived on my floor for years because it was too painful to sit or stand. It was pain unlike anything I knew existed.

I was disabled to the point that I had to drop out of graduate school, give up work and social activities, and move in with my parents because I could not function without help. The transition from an active, independent person to a disabled person, almost completely dependent on others, was devastating.

After many treatments that had little benefit, I fell into a pit of depression, became isolated, and experienced powerful anxiety and panic attacks. I medicated with alcohol to numb the intense physical and mental pain, and had an awful diet. Within 5 years, I weighed around 330 pounds. I didn’t recognize myself. I was a stark contrast to the happy go lucky, 180-pound former athlete. Life was so brutal I almost ended it.

In December 2006, I caught a stomach virus. During that time, I lost about 15 pounds. Getting sick was not the type of motivation to change I would have chosen, but it was exactly what I needed to start putting my life back together. A blessing in disguise that saved my life! After losing those 15 pounds while I was sick, I wanted to keep that trend, so I changed my diet and began exercising (for weight loss and better chronic pain management). Within a year, I lost 150 pounds and my pain was more manageable!

Tom Seaman

People often say to me that I must have a much better attitude now that I’ve lost all the weight and learned to better manage my pain. My response is typically, “Adopting a better attitude is what motivated me take the steps necessary to change my life.” Don’t get me wrong; my attitude is certainly much better and I absolutely feel better, but had my attitude not changed prior I never would have been motivated to change my lifestyle.

Making changes is all about finding meaning and purpose. Mine was two-fold; I was embarrassed at how I looked because of my dystonia and morbid obesity, and I wanted to reduce my weight to eliminate chances of developing other health problems and live with less pain. To put it simply, I didn’t want to suffer anymore.

One of my main motivators is to never forget the feeling of being that sick, and to be grateful for the state of health I have achieved. I still have a long way to go, so I do my best to appreciate what I can do each day, and do it with passion so I stay on a good path. I still have pain issues with my neck and back, but it is night and day compared to the torture I once lived. I just make the very most of what I can do each day and ALWAYS make sure to acknowledge my efforts to maintain a positive mindset. Life may not be what is used to be, but I don’t dwell on the past. I thrive in the present.

My experiences led me back to school in 2012 where I became certified as a life coach so I could help others with their challenges. In 2015, I published my book, Diagnosis Dystonia: Navigating the Journey, which was recognized by the Michael J. Fox Foundation. I wrote this book to give others hope and inspiration, as well as guidance for how to better cope with chronic pain.

I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution. There is nothing that can’t be altered to improve our quality of life. Obstacles provide us with opportunities to grow and become better people, and every day I am grateful for the chance to help myself and others achieve their personal best.

My message to anyone facing a difficult health condition or other obstacle: you are not alone, hope never dies, and every single day is an opportunity to get better. Believe in yourself and never give up, always trusting the strength you have within.

I sure know what you mean when you say constant Charlie horses in the neck. I’ve been dealing with the same mind blowing pain but I have never had any answers for what is wrong except “you have arthritis, you have spinal stenosis, you have severe degenerative disc disease etc.”. And, no one can help me. I’ve had back issues my whole life and I thought that was bad until my neck pain started. I had an injury and for the next 3 years, I spent every minute of everyday in a recliner, with hot water bottles so hot the back of my neck would go purple. I suffered so much. My poor husband did everything. He would go to work and come home wondering if I killed myself. He saw how much pain I dealt with. My head would be pulled towards my chest, still does. I have to forcibly lift it by hand. The muscle spasms are unreal. So, by shear will I’ve gotten myself out of that chair and can walk across the room. I go grocery shopping now etc. Never without more pain than most could handle. I went to a different pain mgmt. doctor who prescribed different pain meds. They got me to where I am now, with some sort of life. Now, being reduced and I am so afraid I’ll go back to that place. My shoulders and neck are so bad, the muscles like rocks. That doesn’t say anything about the back issues I’ve had my whole life. Wish I could go back to just that! Doctor just says I need to go to a class to learn how to cope. What a joke. What does he think I’ve been doing for years?

Great end story for the particular health issue. By all means, if the patient with continuous pain has any type spine difficulties, surgery, loss of weight is a must. Continued movement, via PT or any other type physical activity is most helpful with pain management.

As a two time back surgery pain patient, I was advised by my physician before surgery, then by my pain management specialist to keep moving, keep my weight down, if possible.185 pounds at 6 feet tall, I have weighed as much as 250 pounds. The less weight, with the assistance of oral medication, monetary motivation, and the affirmation that movement helped me in my particular health situation, life has been bearable for over 20 years until the reduction of medication very aggressively.

Treatment and pain management does take effort, on the part of the patient as well as being responsible with medication. Individual assessment and sufficient medication is all…….some patients have.

Great job, very little emphasis is placed on weight gain from that muti-facited aspects of chronic pain itself. I applaud your tenancy finding a daily goal towards a final outcome. Thanks for sharing as it does encourage others.

I too would like to know how you lost your weight. With my condition my pain worsens when I sit with my legs hanging down and standing or walking and etc.. My brain constantly sends messages when I move around that my legs are on fire. My legs feel like they are not getting enough circulation followed with inside the middle on each leg, feels like a infected throbbing tooth that the dentist hits over and over again with a metal probe, making them flare up to almost a strong 9 on the pain scale to my skin on both legs. I hurt everyday. I was starting to loose some weight, over 45lbs, but then my pain medications where lowered so low, that walking is out of it for me,

Way to go Tom! Congratulations on your many wonderful achievements-your journey is very inspirational.
I’m at a low point on my pain journey. I’m the heaviest I’ve ever been (290lbs @ 5’3″, ) & my pain levels (resulting from osteoarthritis & fibromyalgia) are through the roof. Although there are days when I’m ready to throw in the towel, I too posess that inner voice which tells me that yes, I can get through & overcome. You’re so right when you say to be sure to live for THIS MOMENT & to celebrate each victory, no matter how small! It’s definitely an uphill battle, but hey, we are all a part of the “human race,”not the “human walk!”
Take care & keep up the good work!
With gentle hugs, Vickie Heisey 🤗

Hi Heather. Thank you very much! I know it sounds crazy, but I didn’t follow any diet. I reduced my calorie intake (and calorie sources which at the time was primarily pizza, beer, sandwiches, chips, dips, fried foods, etc.) and walked every day. I replaced all of that with an abundance of fresh fruits and vegetables, lean meats, fish, and raw nuts. I do not eat grains, pasta, bread, cereal, crackers, chips, desserts, fried or processed foods, sugar or sugar substitutes, and all I drink is water.This may sound boring, but I make delicious meals, smoothies, and snacks, and have no cravings for anything except to satisfy my hunger. Most importantly, I respect the feelings of fullness so I do not overeat. I go into greater detail in my book if you are interested. You can check it out at http://www.diagnosisdystonia.com. Don’t let the title fool you. It is for anyone with any tough health issue. I just used “dystonia” in the title because that is what I have.

I too lost over 100 pounds being in chronic pain. Mine was not a stomach bug, but a reduction in medication. That took off the first 50 pounds. I then was motivated to start eating better. That took off over 50 pounds more. When I realized that it was medication that had caused all my weight problems, I was insensed! How doctors don’t know this is beyond my comprehension, but I guess that if a drug rep says how great they are, and speed through the side efffects for busy physicians to read the fine print with their magnifying glasses, then we have to start taking responsibility for everything that we injest. Especially when “weight gain” is listed as an “unusual” side effect. I am now off all pain meds. Not to say that I am not in extreme pain anymore, because I am. I just saw the writing on the wall, and I didn’t want to be one of the unlucky people who was forced off their pain meds on the doctor’s schedule, instead of my own. I have also eliminated over 11 medications. Yes, I feel better, and yes I can exercise easier because of the lost weight, but I still hurt like HELL! Some days I wonder if this is worth it, and should I go back on the pain meds. I cannot cook anymore, standing hurts worse than anything. I cannot sleep at night very well, because I cannot get comfortable, and wake up in extreme pain, but I push through. How many health care professionals have congratulated me for getting off pain meds by myself! Oh, if they could only live one day in my shoes…..